Loading...

kelly97's Recent CancerCompass Activity

  • kelly97 has replied to a post on the message board

    Thanks for the advice. My oncologist is having me stay on the subq shots instead of switching to the LAR. They think I'm too thin to get the LAR - lost 30-35% of my body weight & down to only 85lbs. They think it would be too much for me. That's good - I hear people calling it a "butt dart" because the needle is so big - so glad to avoid that at least for now.  

    view post
    • kelly97 has replied to a post on the message board

      They're not considering the laparotomy right now. The chief of surgery doesn't want to do it, unless he knows there's something there for sure. I've been on the subq octreotide shots for about a month now. I have noticed less frequent flushing and bowel movements. I'm also in the process of having Dr O'Dorisio review my records at the Univ of Iowa to see if he'll agree to let me have a gallium 68 scan. I hope my in...

      view post
      • kelly97 has replied to a post on the message board

        I've read in a scholarly journal that carcinoid tumors in the lungs the size of 4-5mm can start metastisizing.  I'm not for sure the size of tumors in other areas when they can start to mets.

        view post
        • kelly97 has replied to a post on the message board

          After my appt with my oncologist & the chief of surgery, & he also brought in 2 other surgeons to discuss, they've decided not to do the surgery. My oncologist wants to take out lymph nodes near the central/backside of my mesentery and in my retroperitoneal area. The surgeon said he wouldn't be able to get to them laproscopically - only the lymph nodes around the periphery, which would do us no good. So, ins...

          view post
          • kelly97 has replied to a post on the message board

            Yeah, my local doctor's office and the people at Walgreen's have never heard of Sandostatin. I may have to travel to my oncology office in Denver for the LAR, which can be about a 2hr drive back home. I want to make sure it's done correctly. Thanks for your feedback.

            view post
            • kelly97 has replied to a post on the message board

              That's great that your has been stable for 3yrs.  Is the LAR injection pretty painful?  That will be next if my body can tolerate the subq for 4 wks.

              view post
              • kelly97 has created a new message board discussion

                Hi, Can anyone tell me if these shots should start reducing symptoms as soon as you start the injections?  I started my injections yesterday. So, far I've only taken 3 shots. Thank you, Kelly

                view discussion
                • kelly97 has replied to a post on the message board

                  Same was true of my mom. Nothing ever showed on her scans and her 5hiaa was only mildly elevated - just like mine. They inly found hers thru surgery, but by then it was too late.  The octeotide scan of hers was negative just like mine. She tried sandostatin, but it only made her have more diarrhea. I remember you saying before that your pancreastatin (sp?) was the only one really elevate...

                  view post
                  • kelly97 has replied to a post on the message board

                    Is your social security disability related to your carcinoid syndrome or something else? Next Wed I'm seeing a social security disability attorney to see if I can get on disability. Right now I'm applying for short term disability thru my work and on a leave of absence. I also have MS and systemic scleroderma.  They have me labeled as carcinoid syndrome but no tumors have been found. I have tachycardia, flushi...

                    view post
                    • kelly97 has replied to a post on the message board

                      No, it's specific to carcinoid cancer.  The tumors that lead to carcinoid syndrome are carcinoid tumors that have typically metastisized to the liver. In the majority of cases, these start out somewhere in the abdomen.  Sometime you may also get the syndrome if you have carcinoid tumors (which are neuroendocrine tumors) in your lungs as well.

                      view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About kelly97

                      Caregiver, Patient

                      Hi, my mom died of carcinoid syndrome in 2005. She had it for at least 8-9yrs. My brother tested positive for it last yr (2011) & has lost 65 lbs. Now I've tested with mildly elev 5HIAA & all the symptoms for it - I've lost 20% of my body weight. I'm still going thru diagnosis process.

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.